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7.06.2016

...and We're Back.

Yes, we are still alive. Life has just been a crazy, crazy roller coaster around here lately. I'll post an update about everything the family has been up to soon, but in the meantime, I wanted to give a quick update on Carly's progress.

It's been over 8 months since my last update about her, so there is a lot to catch up on. First of all, Carly is now 20 months old and weighs just a smidge under 20 pounds. At our recent clinic visit, her GI team was thrilled with her weight gain and dropped her TPN (IV nutrition) from 7 days a week to 5 days a week with 2 days of hydration via her g-tube. This means that we run her TPN through her Broviac (the IV line that goes into her chest) for 12 hours, 5 nights a week, each of which delivers a days worth of calories & nutrition to her body through her bloodstream. On the two night's she's off her TPN, we run a hydration fluid (aka: Pedialyte) into her tummy via her g-tube to keep her hydrated while she's off her TPN.

In addition to Carly's TPN and specialized baby formula, Carly eats a high protein, high calorie, no sugar diet. This type of diet helps her remaining intestine absorb as much as possible and helps reduce the risk of intestinal bacterial overgrowth, which she's at a very high risk of getting. So she eats a lot of eggs, lean meats, fats (for added calories), complex carbohydrates, cooked veggies, and doesn't eat anything with sugar in it, including fruit. Trial and error is teaching us what her body can and cannot digest and tolerate. If a food comes out looking exactly like it went in (this happens a lot), then we know her body can't digest it and that it's not a good food to feed her and/or if it causes her diarrhea to worsen, then again, it's a food we need to avoid giving her.

Based on Carly's food intake, output, and weight gain, her GI team estimates her intestines are working at about a 50% efficiency, meaning they absorb 50% of what she eats & drinks. So in order for her to gain weight like a normal person, she would have to eat twice as much food as a normal person would. Feeding her twice as much food in order to get her off the TPN sounds like a simple solution, but if she eats that much food, it causes her to dump (aka: poop a TON...like it all just comes right out) because she is missing so much of her intestine, so it's counter productive to do that. So instead, we allow her to eat as much as her body will tolerate by mouth (right now that consists of about 70% of her total calories), then the TPN makes up the remaining 30% of the calories her body needs to grow and thrive. As the percentage she eats by mouth increases and her intestines continue to adapt and absorb, the TPN will be gradually decreased until her body has proven it can thrive without it. The day her line is finally removed will be a very happy day!

This is Carly's nightly concoction of meds, TPN, and feeds. If I prep this all by myself, it takes me around 45 minutes to prep everything you see on the tray and then another 20-30 minutes to get her hooked up to everything and to give the meds. When Mike and I tag team it, we can get everything prepped and hooked up to her in about 30-45 minutes, which is pretty good time.

Carly can't go swimming, but she can take an occasional bath as long as we are really careful to protect her central line & dressing from getting wet. So we cover her dressing with Glad Press'n Seal wrap and then tape the edges with tape to prevent the dressing from getting wet. She can then play in an inch or two of water for a little bit, which she loves.

Being on TPN sometimes stinks because it means you get sick a lot and have a lot of hospital stays. Carly can go from running around as a happy, energetic, mess-making toddler like this:

...to not eating, running a fever, being lethargic, and just wanting to be held in a matter of just a few hours.

When she gets like that it's very concerning because it could mean she's developed a line infection. We monitor her temperature very closely when she is like that and have to head to the ER if the fever ever hangs out above 100.4 degrees because line infections can become life threatening very quickly.

Unfortunately she developed her very first line infection about a week after her first birthday back in November, which required a 5 day hospital stay. She was then sent home on 3 antibiotics, which we had to run through her Broviac (the IV line in her chest)--the first one (Ampicillin) every 6 hours for 20 minutes, the second one (Ciprofloxacin) every 12 hours for 40 minutes, and the third one (Vancomycin) we had to keep locked in her line when the others weren't being run through it. We had to run each of those several times daily for 2 weeks straight, so it made it really tricky to leave the house during that time. Antibiotics completely destroy her already destroyed gut which exasperates her diarrhea and doubles her already heaping pile of daily poop soiled laundry...

Yes, that right there is one day's worth of Carly's laundry: 3 crib sheets, 3 blankets & 9 outfits all covered in diarrhea. Yummy.

Her 2nd line infection happened the end of April, so we enjoyed another 5 day, 4 night stay on the exotic 3rd floor of Primary Children's. The nursing staff and doctor's there have come to know Carly well. Carly enjoys growling at them...ha! They again sent her home on a similarly scheduled concoction of antibiotics, which we ran through her Broviac (the chest IV) and then they placed a PICC line in her arm, which is where we ran her TPN through during those 2 weeks while the Broviac was being treated for the infection.

She's been doing so great since her last infection and really is progressing so well. She has an occasional set back or emergency situation here and there, but for the most part, she is doing phenomenally well.

Developmentally, Carly is walking (started around 18 months old) and can say mama, ba-ba, ball, up, uh-oh & dada. We call her "destructo baby" because she is constantly running around the house destroying everything. Here's a clip of when Carly first learned how to climb up stairs (in December)...

And a clip from when she learned how to climb down the stairs (early June)...

Carly is an amazing little girl who I know is on a special errand from the Lord. Part of that errand has been that of changing my heart as her mother, though I believe she has more work to do than just that. It takes great sacrifice and a complete loss of self to care for Carly. But in doing so, I have witnessed the great blessings and joy that come through sacrifice. Through Carly, I have learned the complete necessity of relying on our Savior. I feel His hand on a daily basis giving me the strength and support necessary to do the things that are required of me. When I feel I can go on no more (which is often), His grace and atonement carries me. Our family is learning greater patience, humility, charity and faith. We are being molded into far better people because she is in our lives.

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"Life is not a competition with others. In its truest sense it is a rivalry with ourselves. We should each day seek to break the record of our yesterday. We should seek each day to live stronger, better, truer lives; each day to master some weakness of yesterday; each day to repair past follies; each day to surpass...ourselves. And this is but progress."